Frustration and Confusion

[Guest guest]

Arghhh. I have had the most frustrating holiday, and I am beginning

to wonder if I really do have pancreatitis, or some other

unidentified condition.

I would really appreciate any insight any of you can offer -

having " been there and done this " .

About a week ago, I woke up with the familiar pain just under my

ribcage. It got worse when I ate. So, I did what I usually do (and

what my family doc has recommended) - went off food for 2 days,

stuck to clear liquids, and took Pancrease enzymes when I did start

eating again. It seemed to get better, but then got worse. My blood

sugar got really low while I was out xmas shopping, and I ate a high-

fat almond bar (stupid, I know). For the next 36 hours, I had

intense, quaking nausea, just controlled by gravol. I finally went

in to Emerg. Christmas day. I was dehydrated, so they gave me IV

gravol & fluids - but all of my bloodwork was normal!! I figured,

great, it's just a virus, so I ate a small turkey dinner boxing day

(with enzymes) and I'm back where I started - gas and pain.

What is going on?????

My history is: acute panc at age 10, following the mumps. As an

adult, many undiagnosed episodes of pain and weight loss for several

years, then finally a diagnosis of chronic panc after noticing a

correlation between any alcohol intake and onset of pain. I have

never had any diagnostic tests, other than bloodwork. My doc said

they weren't necessary, because they would just confirm his

diagnosis. I should note that one other time, when in emerg for

horrible, level 10 pain, with abdominal swelling and tenderness, and

fever, my amylase was also " normal " . Between flare ups, I also have

symptoms (warning - detailed description of bodily functions)such as

frequent BMs and " greasy " , stick-to-the-bowl, smelly stools.

I'm starting to feel like a hypochondriac - but really, I'm not!

It's very frustrating to experience such intense pain, and not to

enjoy food, because you know it will cause you grief (and believe

me, I love to eat!).

Thank you for letting me vent. This seems like a very supportive

community. Have any others out there had similar experiences?

Thanks.

JL

[Guest guest]

JL,

If you're looking for confirmation that these symptoms are typical for someone

with chronic pancreatitis, then yes, I can say that " I've been there, done

that " .

I guess you're confused because you said that you did have a definite

diagnosis of chronic pancreatitis, based on bloodwork that was done earlier.

But now you've got all this stuff going on, and your bloodwork was normal and

this has you confused. Believe me, it's very " normal " to have non-elevated

amylase and lipase levels and still be in the midst of an active acute attack

with chronic pancreatitis. As your chronic condition becomes worse and more

of the pancreas is damaged, the pancretic enzymes no longer elevate.

I was admitted to the hospital back in October with an acute attack. When the

attending physician at the hospital asked my admitting GI why he hadn't

ordered the standard A & L blood tests prior to my admission, my GI, who is

very experienced and knowledgable about the extent of my condition, said

that they could do the tests if they were required, but it wasn't necessary for

him, and that they wouldn't show any elevation anyway. He told them that

there was no doubt that I was in the midst of a severe acute attack, but

because of the damage to my pancreas he knew they wouldn't show any

outstanding elevation. He was right, and when the tests came back, both my

lipase and amylase levels were below normal.

There are several medical websites that substanciate this. The Hopkins

GI webpage, MUSC Digestive Diseases website and LabWork online all verify

that with more advanced chronic pancreatitis serum lipase and serum

amylase levels can be lower than normal, normal, or elevated, it just depends

upon the amount of pancreatic damage that each individual has experienced.

I hope this answers your question, and clears up any questions you may have

about whether you have the " flu " or pancreatitis. If you want the links for the

websites I mentioned, let me know. I'm sure I won't be the only one to tell

you that they, too, show normal bloodwork when admitted with their

pancreatitis attacks. All that means is that your condition has become more

advanced. If you have any more questions, please feel free to post them

again.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and should not be

substituted for consultation with a medical professional.

JL wrote:

> Arghhh. I have had the most frustrating holiday, and I am beginning to

wonder if I really do have pancreatitis, or some other unidentified condition.

About a week ago, I woke up with the familiar pain just under my

ribcage. It got worse when I ate. I finally went in to Emerg. Christmas day. I

was dehydrated, so they gave me IV gravol & fluids - but all of my bloodwork

was normal!!

I figured, great, it's just a virus, so I ate a small turkey dinner boxing day

(with

enzymes) and I'm back where I started - gas and pain.

What is going on????? JL